Why Do Some Type 1's Live Very Long Without Complications?

[Richard157]

On April 7, 2009, I joined a chat with Gary Scheiner on diabetestalkfest.com. Gary is the author of the book "Think Like A Pancreas" and other wonderful books on diabetes and self management. During that chat I asked Gary if he knew any people who have had diabetes for more than 60 years without any complications. This was a moderated chat and the questions were sent to Gary in the order they were asked. The time was running out and I thought my question would not be answered. Then, Gary went overtime and answered my question just before he signed off. His exact reply was:

"Richard - In fact, I do. A 68-year diabetic woman. Research is showing
that there is a genetic sequence that protects some people against
microvascular and neural complications."

That quote might not mean as much to some of you as it does me. It still gives me chills sometimes when I read it. It meant so much to me! I hope it means a lot to some of YOU readers too. It strengthens my determination to keep up my program of self management and makes me think I can reach the record set by William Rounds. William has been Type 1 for 85 years and is alive and well.

[foxl]

Wow ... as a measly type 2 who only was dx'd at 51 ... I cannot top that by any estimations, but would love to die trying!

[Delphinus]

On April 7, 2009, I joined a chat with Gary Scheiner on diabetestalkfest.com. Gary is the author of the book "Think Like A Pancreas" and other wonderful books on diabetes and self management. During that chat I asked Gary if he knew any people who have had diabetes for more than 60 years without any complications. This was a moderated chat and the questions were sent to Gary in the order they were asked. The time was running out and I thought my question would not be answered. Then, Gary went overtime and answered my question just before he signed off. His exact reply was:

"Richard - In fact, I do. A 68-year diabetic woman. Research is showing
that there is a genetic sequence that protects some people against
microvascular and neural complications."

That quote might not mean as much to some of you as it does me. It still gives me chills sometimes when I read it. It meant so much to me! I hope it means a lot to some of YOU readers too. It strengthens my determination to keep up my program of self management and makes me think I can reach the record set by William Rounds. William has been Type 1 for 85 years and is alive and well.

My personal thoughts would be, insulin offers better control of BG as well, especially with the introduction of fast acting insulins. It allows you to be more flexible too. Of course, insulin is primarily how type 1's control diabetes, and only a small percentage of type 2's.

Of course, it's not like other type 1's don't know this. Just what I think the reason is.

[Delphinus]

Wow ... as a measly type 2 who only was dx'd at 51 ... I cannot top that by any estimations, but would love to die trying!

Great attitude. :D

[Gordonm]

I think more and more type 1s will be living longer now due to better insulins and better ways to moniter BS. When I was Dxd we had crumy urine testing. I went 4 times a year for a fasting BS. I took 1 shot a day of pork NPH. Think my BS ran high a lot. I do. Being Dxd now though not a blessing at all you have the best chance for a long healthy life. The insulins and delivery methods and technology will continue to improve.

Those that are in the 50+ years of type 1 are a miracle in my mind. They went for years with little or no monitering. I can say my first 10 years were of little control. Not because I was not trying or bad I just did not have the resources tha tare available today.

[BlueSky]

Some people are lucky in that they have good genes. But that is only part of it. According to the data, T1s who die of old age without major complications accomplish this because they consistently maintained good control. An endo told me many years ago that if you can get to the 20th anniversary of being T1 without complications, you probably won't have any for the rest of your life. After 20 years, the self-discipline required to maintain good control has become sufficiently entrenched to last the rest of ones life. These days, with modern insulins and testing metres, this should be achievable for most of us.

[Delphinus]

These days, with modern insulins and testing metres, this should be achievable for most of us.

I agree.

There are no valid reasons a person cannot enjoy a very healthy and long life with the advances made in treatment, monitoring equipment and insulins.

I am primarily referring to those with no current complications, and more recently diagnosed diabetics of course. Even if you do have some complications, you can even diminish their impact somewhat.

If you discount the inconveniences associated with having diabetes, you can pretty much enjoy life as if you didn't have it at all, if you choose to do so.

[Delphinus]

To add, I am one of the fortunate type 1's.

I have zero complications at this point.

So far, it's just affected mean in ways such as mood(highs and lows), and hunger.

And of course, the wallet.

[Ategeler]

Wow- what an empowering way to leave such an informative chat!

[DanG]

I think more and more type 1s will be living longer now due to better insulins and better ways to moniter BS.

We must realize - we may not see the 60 years Richard157 has seen, nor the 85 years that William Rounds has seen. We are the guinea pigs for the modern pharmaceutical insulins - designer insulin, rather than the pork and beef insulins we have used for the majority of our lives. Like you, Gordon - I have been using insulin for 35 years, only I was given lente to play with for 30 years, until the pharm-industry dis-allowed beef and pork insulins in US.

I am skeptical of modern practices, as all I can see from any industry today is their unending thirst for greater profits for themselves. That tenor does not speak well for someone like me who needs their product to live with - insulin. They could care less how long I live - they have profit motive pure and simple. For the person who wants to make the choice to purchase beef or pork insulin, that choice is not available - not unless I want to go thru the hoops to become a homeland security sanctioned hazardous product importer. Profit motives are great - but I think with the view that we have today of the idiocy that profit motive has driven the entire wold ekonomy, I think it has run its course and we may really be hurting sometime in the future not to distant. Designer insulins may be causing problems that we cannot see yet - then what? No rain on the parade - merely a point of reference.

[Jan B]

I have had a good life with no intention of dying prematurely. I shudder at how horrible my control was for a few years, but am blessed to have good genes. My complications are minor -- my health isn't much worse than any non-diabetic my age. The best thing of all is that with good control, even a little late in the game, some of the complications can be reversed.

Richard is one of my heros!

I was also told what BlueSky mentioned, that if you don't have serious complications after 20 years, you may never have them. Since I'm at the 30 year mark, that really makes me feel good. I'm believing it, for my own sake! Also, a good attitude, and a lack of self-absorbtion (help others & don't worry about self so much) can do wonders for our health.

[poodlebone]

Some people are lucky in that they have good genes. But that is only part of it. According to the data, T1s who die of old age without major complications accomplish this because they consistently maintained good control. An endo told me many years ago that if you can get to the 20th anniversary of being T1 without complications, you probably won't have any for the rest of your life. After 20 years, the self-discipline required to maintain good control has become sufficiently entrenched to last the rest of ones life. These days, with modern insulins and testing metres, this should be achievable for most of us.

I just passed my 22nd anniversary with Type 1 and have no complications. For the first 11 years I had horrible control (no insurance+ denial+ignorance) so I don't know if I fall into the "consistently maintained good control" group. I also have no idea if I have good genes because I have nobody to compare it to. I am the only person with diabetes (of either type) in my family, and I have 5 siblings, loads of nieces & nephews, aunts & uncles and cousins.

I do think that the newer insulins & methods of delivery plus the ease of home testing will allow more and more Type 1s to live much longer without complications.

[Richard157]

Blue Sky, I did NOT use good control for my first 40 years and I am sure that William Rounds did not do so for, perhaps, his first 60 years. We were using insulin taken from animals in our early years. one injection per day. We could not test our blood sugar until the mid 1980's and we did not know we were supposed to eat low carb. I ran high urine sugar most of the time during those 40 years. My control was terrible but there were no A1c's so I did not know. Despite all that I have no complications after 63 years of T1D. (I do have some minor nerve damage.) I suppose Gary Scheiner's explanation must apply in my case.

[xMenace]

You are an inspiration Richard, but one cannot rely on genes to be their savior just as one cannot rely on lottery winnings for retirement.

The odds are stacked against us on many levels. It is up to every one of use to achieve the best control we can. I personally feel that diet is a major player with complications. I don't know which components of diet. Eat food. Not too much. Mostly plants (not sugar).

[Lloyd]

After 20 years, the self-discipline required to maintain good control has become sufficiently entrenched to last the rest of ones life. These days, with modern insulins and testing metres, this should be achievable for most of us.

I suspect the same holds true for T2's
I know I don't make enough insulin to shake a stick at, now.

-Lloyd

[Subby]

You are an inspiration Richard, but one cannot rely on genes to be their savior just as one cannot rely on lottery winnings for retirement.

Richard said himself in his first post "It (the gene idea) strengthens my determination to keep up my program of self management".... I don't think there is even the hint of suggesting not doing your best at controlling the condition. If I was in a position I felt my genes were on my side due to a really good run, I can see exactly where he is coming from that it's a positive, motivating force. I don't feel I can make that judgment myself yet, 18yrs and I feel a little nervous at this stage (but certainly not depressed or hung up about it - probably the best I've ever felt about it).

It will be interesting to hopefully hear if something comes about from this research. Perhaps it will lead to further medical breakthroughs as well. To have such a hope or interest, also doesn't remove the importance of good practise and control, one bit :)

[DeusXM]

I'm sure genes play a part, and also I agree with the earlier comment on how we have more access to better insulins now. I know I've had the opportunity to have great control since I was diagnosed in 1998. I wonder how many T1s diagnosed in 1948 can say the same?

The other thing as well is a little different for me. I know I've probably developed a bit of a reputation here as hating anything to do with supplements but I think there is a body of research that suggests 75% of people with diabetes (not sure of type) have low levels of B vitamins, which play an important role in metabolism. I'm wondering whether there's any correlation between the rate of complications and the rate of low vitamin B incidences. I've personally decided to err on the side of caution and now take a B supplement every day. I know I used to do very well when I was younger and used to eat a LOT of Marmite anyway, which you may be aware is one of the richest sources of B vitamins you can eat.

[foxl]

No one has mentioned earlier diagnosis yet ... ;)

[Subby]

No one has mentioned earlier diagnosis yet ... ;)

Not sure how that has a bearing? What kind of earlier diagnosis are you seeing for type 1s?

[foxl]

Not sure how that has a bearing? What kind of earlier diagnosis are you seeing for type 1s?

Was being sarcastic, but yeah, no real screening for type 1's. Although ... LADAs and MODYs might get caught sooner, with annual or triennial OGTT's, no? And of course differentiating them from Type 2's right away, instead of this wait-and-see nonsense would also help ... but classic 1's? Maybe not.

[Subby]

Was being sarcastic, but yeah, no real screening for type 1's. Although ... LADAs and MODYs might get caught sooner, with annual or triennial OGTT's, no? And of course differentiating them from Type 2's right away, instead of this wait-and-see nonsense would also help ... but classic 1's? Maybe not.

I'd actually say that type 1s do seem to be getting caught a lot earlier at times these days, quite possibly through the proliferation of knowledge and testing for "fuzzy cases" shall we say, like early LADA and "prediabetes"... but I suppose the thing is, in the scheme of things, it's a bit of a drop in the ocean. Half a year of elevated BGs is not much next to scores of years of somewhat elevated A1c and fluctuation effects on a regular basis, which is much more the norm for a well controlled t1 than a well controlled t2.

[Tattoo azz]

Deus, remind me NEVER to come visit you i HATE marmite with a passion! lol. I think we (diabetics) are living longer due to a combination of things just as Deus and others have suggested. Personally i don't worry about it, i have a similar perspective on my life as the late Richard Harris had on his i.e life is for living, have fun. Sure i have my shots and my thyroxin and my metformin and i test, but i don't obsess about my control or my diet, i'm 34, reasonably healthy and living my life how i want to. If that creates a problem for me later on then fine i'll deal with it later on, but i'm not going to take millions of supplements, weigh darn near everything i eat or listen to every little bit of advance in medicine that the medical community come up with (because in 5 minutes you can bet someone else will come up with something completely different). ok rant over :D

[networkguy]

Hi all...been lurking for about 6 months, first post :D

I was diagnosed at 10 months of age in 1966, so Im coming up on my 43rd year. The only complications Ive had is a little retonopathy, but Im vision corrected to 20/20 with no restrictions so its all good. My last A1C was 6.7, and Im usually between that and 7.

Ive also read/heard the magical 20 year mark thing, specifically for kidney disease. I saw some graph that showed if you havent had issues in 20-25 years, your chances after that (assuming same good care) the chances drop drastically. So maybe genes is part of it. I givce some of my health credit to mom. She was a nursing student when I was rx'd and I was lucky to have caught it early. She instilled good care values early on, and I think that has alot of bearing.

Anyhow, good discussion :)

[osaugen]

The Joslin Diabetes Center in Boston is doing a thorough investigation of the issues raised in this discussion. It interviews and does blood chemistry and other tests on people who have had Type 1 for 50 or 75 years. When I received my 50-year diploma from Joslin last year (I have been a Type 1 for 63 years) I was told informally of two tentative findings. Those of us who have made it seem to have one thing in common: High "good cholesterol" levels. Also, it does not seem to be all that important to have had perfect blood sugar control through all those years. I am told Joslin is in the process of creating a web page, and I hope the findings will be made generally available as soon as they can be scientifically established.

[Richard157]

Hello osaugen, welcome to our community! Someone on the tudiabetes site said the exact same thing you said about Joslin, the 50 year diploma and good cholesterol. Maybe you are both the same person with two usernames? Just curious. I have also been T1 for 63 years and I have no complications except mild nerve damage. That report being prepared by Joslin may be very helpful. Good luck to you!

Richard

[BlueSky]

.... Also, it does not seem to be all that important to have had perfect blood sugar control through all those years. ...
This is interesting. It seems the importance of near-normal blood glucose is being overemphasized. Blood glucose is easy to measure, so it becomes the focus of diabetes self-management. But there must be other stuff going on (which is reflected by cholesterol levels) that is even more damaging.

[DanG]

Blood glucose is easy to measure, so it becomes the focus of diabetes self-management.

Blood glucose is also quite expensive to measure.
Check it out - I mean, not what you pay with your insurance discount - see what J&J is charging us for each strip - $1. If I do not include the insurance write-off I receive for the strips and other stuff - I spend more money on insulin, strips, syringes than I spend on food. Somehow, that seems wrong. I cannot make J&J charge me less, and I cannot wish for gov't health care - no way - but, it seems someone is making a bundle of cash by preaching the mantra we each preach to each other - test often - at $1 per test strip - check it out. I am getting down to maybe 1 or 2 strips per day - carefully managing a consistent routine day to day and testing when it matters most - it is a thought experiment. Many jobs are being lost every day around me and I want to get into practice in case it hits home. At $1 per blood glucose test - if things get tough, I will become tough - just getting practice these days.

[Subby]

Also, it does not seem to be all that important to have had perfect blood sugar control through all those years. I am told Joslin is in the process of creating a web page, and I hope the findings will be made generally available as soon as they can be scientifically established.

Hi osaugen. I'm curious if you can put some very rough numbers on what kind of blood sugar control you are talking about. Are we talking around A1cs of 10s? 8s? 6s? Thanks. As I said, just very rough. Ideas of "good control" does vary quite a bit!

[DeusXM]

Tattoo azz - we might disagree on Marmite but you and I both have the exact same attitude to our condition.

[JJM335]

I used to do very well when I was younger and used to eat a LOT of Marmite anyway, which you may be aware is one of the richest sources of B vitamins you can eat.

I LOVE Marmite.

Based on a statistically significant sample of two I can now state that eating Marmite is effective in reducing or eliminating complications.

Maybe I should bag the Apidra and load my pump with Marmite.

Joel

[amccrazgrl]

For me to have had D for 63 years I'll be 76. Then to make 85 years I'll be 98..wow!!

[NoraWI]

No one has mentioned c-peptide which has been found to allay microvascular complications. I think it's a matter of maintaining enough endogenous insulin production to keep the body manufacturing the c-peptide, since store-bought insulin does not contain it.

[Subby]

Is this a suggestion that the t1s who have shown to not tend to have complications after many years, were in fact LADAs or type 1.5s (the only ones who may "maintain" endogenous insulin production to much of a degree for much time)? Is there any outward indication of that, in the type 1s who have gone a long distance, I'm wondering?

It's an interesting thought. Also bearing on it is that older insulin ago used to have c-peptide included. One would think that if c-pep was the answer, t1s would have had much better luck in the past, and everything would have gone downhill fast, with the introduction of lab created insulin. Not sure that has happened? But maybe there is a conspiracy and complications did get worse - I don't discount these things completely!

I'm raising these as further questions, not to be argumentative ;)

[REDLAN]

I found a cadaver study on pubmed a while back....

and irritatingly I can't find it again.

From recall the study found that about 80% of type 1's still had active beta cells. It also found that the more beta cells that remained then the lower the A1c.

The problem with the Joslin Centre study is the massive issue of selection bias...

... all the subjects have survived a long time with type 1. Ironically this will tells us very little about WHY they have survived for such a long time.

It can however throw up correlations between factors such as remaining active beta cells, c-peptide, HDL levels, which we can then test in controlled trials.

e.g. if HDL levels are significant in long term survival - then I can take 2 groups, and give 1 a statin (lowering cholesterol, but also raising HDL:LDL ratio) and the other a placebo, and then see if the treatment group gets fewer complications.

Similarly I could run the same test with c-peptide. One group gets the c-peptide the other gets sterilised water injections.

[Richard157]

Subby, are you suggesting that the beef/pork insulin I took for 40+ years contained C-Peptide?? I have never heard that about ANY insulin. I will have to research that. Very interesting. Hmmmm! I stsrted having mild complications after strarting modern day insulins but pumping has eliminated those problems. Could the emergence of those complications be due to the modern insulins NOT having C-Peptide? I am just following your train of thought, I think. I am not saying that I really think you are onto somrthing. Anyway, thanks for your post.

[AngelKitty]

Is this a suggestion that the t1s who have shown to not tend to have complications after many years, were in fact LADAs or type 1.5s (the only ones who may "maintain" endogenous insulin production to much of a degree for much time)? Is there any outward indication of that, in the type 1s who have gone a long distance, I'm wondering?

It's an interesting thought. Also bearing on it is that older insulin ago used to have c-peptide included. One would think that if c-pep was the answer, t1s would have had much better luck in the past, and everything would have gone downhill fast, with the introduction of lab created insulin. Not sure that has happened? But maybe there is a conspiracy and complications did get worse - I don't discount these things completely!

I'm raising these as further questions, not to be argumentative ;)

Firstly, great thread Richard! People like you are so inspiring to realtively newly diagnosed T1s like me - I adore reading your threads. Anyone that has been living with this disease for as long as you have is My Hero!

Subby, I think you have raised some really interesting and relevant points of discussion, was thinking along the same line as well regarding dx's of 1.5s / Lada and C-Peptide relevance.

But as in most scientifically / medically related matters: there are always "many differentials" to consider and account for.

[Delphinus]

Wow ... as a measly type 2 who only was dx'd at 51 ... I cannot top that by any estimations, but would love to die trying!

Foxl,

Not sure why you would describe type 2 as measly.

I don't envy type 2 diabetics at all.

You have to have stronger will power, especially type 2's who only use oral meds to manage it.

I couldn't do it. I am a foodie. I love my food and I eat alot. Altho I am in good shape.

With insulin, especially fast acting insulin, you have greater flexibility as to what, when, and how much you eat.

I know a handful of type 2's do use insulin as well, but of course almost all type 1's, (100percent?) are insulin dependant.

I tip my hat to type 2's who have the discipline to maintain good numbers with only oral meds and exercise.

If I want an extra treat, I simply bolus extra units, and be wary that i can't do that too often or I'll gain weight. When a type 2 wants more to eat, or a treat, they have to burn it off. Therefore, they earn it.

I don't earn my treats, I stab myself, done. Well, i suppose that isn't so much fun either, but it doesn't require as much physical activity. :D

[Subby]

Subby, are you suggesting that the beef/pork insulin I took for 40+ years contained C-Peptide?? I have never heard that about ANY insulin. I will have to research that. Very interesting. Hmmmm! I stsrted having mild complications after strarting modern day insulins but pumping has eliminated those problems. Could the emergence of those complications be due to the modern insulins NOT having C-Peptide? I am just following your train of thought, I think. I am not saying that I really think you are onto somrthing. Anyway, thanks for your post.

Definitely not wanting to get controversial myself Richard, was just thinking about what Nora was saying and how it correlated to type 1s and lack of c-peptide, and in what circumstances type 1s might have it/be getting it.

My main source for believing that bovine and porcine insulin have c-peptide, is mainly that number of proponents of those insulins have claimed so! I can't remember if I saw it elsewhere. I'll admit that's a pretty shaky source when I think about it, so definitely worth checking and researching it further if of interest. Right at the moment, I can't get a clear confirmation from a web search, myself.

[Subby]

Not sure why you would describe type 2 as measly.

I'm not sure either, the word doesn't seem to have a place in describing either condition, where experience, difficulty, and severity of symptoms/complications can vary so wildly from person to person, and neither are exactly minor ailments.

Well I suspect it was just a throw away line, anyway.

[foxl]

[QUOTE=Subby;451417]Definitely not wanting to get controversial myself Richard, was just thinking about what Nora was saying and how it correlated to type 1s and lack of c-peptide, and in what circumstances type 1s might have it/be getting it.

QUOTE]

I am wondering ... as someone who purified proteins by (mostly gel) chromatography for a few years ... how IS animal insulin purified? Porteins are separated out by molecular weight (and size and shape are also factors). C-peptide in all likelihood would elute separately form the insulin and thus would not be included in prepared animal insulin. Does anyone know how animal insulin was prepped?

[foxl]

I'm not sure either, the word doesn't seem to have a place in describing either condition, where experience, difficulty, and severity of symptoms/complications can vary so wildly from person to person, and neither are exactly minor ailments.

Well I suspect it was just a throw away line, anyway.

Yes, it was, and you are overanalyzing. I said it mostly because T1 is (usually) early onset.

And yeah, as far as willpower ... we'll see how long I can sustain my weight and BG's ...

[sarahspins]

One would think that if c-pep was the answer, t1s would have had much better luck in the past, and everything would have gone downhill fast, with the introduction of lab created insulin. Not sure that has happened? But maybe there is a conspiracy and complications did get worse - I don't discount these things completely!

I think honestly any "benefit" there may have been with having c-peptide in the animal insulins is lost when you consider what BG testing was like back then.... as even just 20 years ago home testing was basically non-existant. Control just wasn't as tight as it is now, nor was it truly realistic without lots of lows before Humalog hit the market in 1996.

I remember when I was diagnosed, having a meter that took 5 microliters of blood (that's like 10 times as much as most now) and took 45 seconds to count down... which is an eternity compared to today's meters. CGMS was just wishful thinking.. I remember what a big deal it was to go on just a 3-day CGMS session 4 years ago (when all you could do was see the #'s afterward), and now there are tons of T1's using it all the time (I hope to be one of those soon).

I have a neighbor who has had T1 for almost 60 years, and she has some declining kidney function (she takes something for it and watches what she eats, but isn't on dialysis), but no other major complications. I really don't think that's too bad for someone in their late 70's. She also had polio as a kid, and suffers more effects from that than from D.

[Subby]

Subby, are you suggesting that the beef/pork insulin I took for 40+ years contained C-Peptide??

Another quick look, and I see some statements that suggest it, to my limited understanding. Here's an example:

"Antibodies reactive with the C-peptide portion of proinsulin can be detected in the sera of patients on conventional bovine insulin regimes which include the soluble form."

C-peptide antibodies induced by bovine insulin the...[Clin Exp Immunol. 1982] - PubMed Result (http://www.ncbi.nlm.nih.gov/pubmed/6756729?dopt=Abstract)


Subby, I think you have raised some really interesting and relevant points of discussion, was thinking along the same line as well regarding dx's of 1.5s / Lada and C-Peptide relevance.

But as in most scientifically / medically related matters: there are always "many differentials" to consider and account for.


I agree 100%, Vic.

I think honestly any "benefit" there may have been with having c-peptide in the animal insulins is lost when you consider what BG testing was like back then.... as even just 20 years ago home testing was basically non-existant. Control just wasn't as tight as it is now, nor was it truly realistic without lots of lows before Humalog hit the market in 1996.


This is my basic impression too, for the very little it is worth! That if there is any benefit to endogenous c-peptide, it's just going to be one more element easily lost in many cases, not a definitive one. But, it's something I'd like better info on than I've been able to find, that's for sure.


I remember when I was diagnosed, having a meter that took 5 microliters of blood (that's like 10 times as much as most now) and took 45 seconds to count down... which is an eternity compared to today's meters. CGMS was just wishful thinking.. I remember what a big deal it was to go on just a 3-day CGMS session 4 years ago (when all you could do was see the #'s afterward), and now there are tons of T1's using it all the time (I hope to be one of those soon).

I have a neighbor who has had T1 for almost 60 years, and she has some declining kidney function (she takes something for it and watches what she eats, but isn't on dialysis), but no other major complications. I really don't think that's too bad for someone in their late 70's. She also had polio as a kid, and suffers more effects from that than from D.

It all just adds to the mystery everyone's touched on, especially considering the less than perfect control (by today's standards) that your neighbour would have had for so many of those years.

As a side, I'm hanging out for CGMS too... we're about 4 years behind the US here, so are still in the hope for a 3 day session now and then, phase. I hope to hear the news sometime that it's been rolled out for insurance coverage here....

[Richard157]

Thanks very much for that reference Subby! Now I am thinking I may have been getting some C-Peptide from the animal insulins I used for 40 years. I suppose the same would be true of porcine insulin. After I had been off those insulins for awhile I started having complications for the first time ever. Mild neuropathy and other nerve damage and some retinopathy too. It took pumping and tighter control to eliminate those problems. So is that just a coincidence or was there anough C-Peptide in those insulins to pull me through without complications? I doubt there was enough and I wonder if it was really active in my body. I guess I will never know but this was a very interesting point. I am happy you brought it up. Thanks!

[conguitos]

Hi Richard, I've read your story, and I have to admit that you're an inspiration for me, not for the reasons that some may think, but because you're the best example that a horrible control can lead to a long lifespan ;)

As a kid and most of your adult life you were probably high all the time, with some terrible lows. You ate carbs like there's no tomorrow, you've been on natural insulins most of your diabetic career. I see there your longevity. Natural insulin. And surely your positive attitude towards life.

Others have followed strict diets, with minimal carbs and lots of sports.

Others may have genes that protect them.

I'm pretty positive that we won't see how detrimental those GE insulins probably are, because before their effects will be visible, this problem will be curable, if it isn't already for some of us.

Don't forget that most of the complications that type Is died in the past were severe lows and DKA, and not neuropathy or something else. Cardiovascular problems come usually with overweight, which seems to come with the combination of execisve carbs and fat.

Last but not least, almost nothing is known about the causes of diabetes, just in recent years biochemists are beginning to discern the sources of the problems and the solutions for them.

There's a lot of business behind diabetes, and business is war and war is good...

[conguitos]

Thanks very much for that reference Subby! Now I am thinking I may have been getting some C-Peptide from the animal insulins I used for 40 years. I suppose the same would be true of porcine insulin. After I had been off those insulins for awhile I started having complications for the first time ever. Mild neuropathy and other nerve damage and some retinopathy too. It took pumping and tighter control to eliminate those problems. So is that just a coincidence or was there anough C-Peptide in those insulins to pull me through without complications? I doubt there was enough and I wonder if it was really active in my body. I guess I will never know but this was a very interesting point. I am happy you brought it up. Thanks!

Hi Richard, you didn't get "some" c-peptides, you got a lot of them. Modern insulin analogues, that are sold as "super duper" insulins, are probably ****, this is my thought. They lack everything that is beneficial and give you something that by nature should be used as minimally as possible, insulin. Insulin is probably the main culprit behind aging and problems like cancer, ms, diabetes, lupus, etc...·

Modern insulins are quite impure, you get a lot of unknowns by injecting them, probably a lot of e-coli DNA that may wreak havoc in your body. Natural insulins have a higher degree of purity than modern e-coli bacteria insulins. E-coli bacterias are a common source of diseases and they are what we poop out.

I don't understand why people are so excited about those "fast acting insulins". I really think that if you're able to use natural insulins, then take that option. You can use them with a pump as well. In Europe you can use them, you only have to force your doc to prescribe them.

But my philosophy is, what makes you sick, in our case carbs, well don't eat it. I know it's difficult, since carbs are highly addictive. They're like drugs. I myself have experienced it, even seeing spaghettis flying before my eyes, or cookies...

I thimk that carbs are not essential and our bodies are not built for the loads of carbs we ingest without heavy exercise. If you still eat pizza, spaghetti, potatoes and everything carby, then don't wonder why you'll have problems. Like an alcoholic that still drinks...

If you still eat stuff that uncooked/unprocessed, like beans or soy, are poisonous to the human body, then don't wonder...

Another main source of problems is possibly gluten, gluten is an opiate. Like heroin, gluten is extremly problematic for the nervous system. Yet they put gluten in almost everything, because it is highly addictive, so if you eat something with gluten in it, you will want more. Business, business...

Then there is alloxan, which is produced when you mix chlorine with proteins. White flour in the US and some third world countries is bleached with chlorine, which will produce alloxan. Alloxan is used to make some species type 1 diabetic. 1 study claims that alloxan isn't a problem for humans (wonder who sponsored this study), I don't believe a word, since another study shows that in type 1 diabetic children alloxan levels are extremly high, which is more than logical.

To me this whole diabetes business is a travesty, and the saddest thing is that most people suffering it are so depressed that they won't research into it and let the duping going on.

[DanG]

Hi Richard, you didn't get "some" c-peptides, you got a lot of them. Modern insulin analogues, that are sold as "super duper" insulins, are probably ****, this is my thought.

<SNIP>

To me this whole diabetes business is a travesty, and the saddest thing is that most people suffering it are so depressed that they won't research into it and let the duping going on.

conguitos - I could have written all of this - thanks for saying it.
Now, the rest of us need to read this again and react.
I don't know what we can do in the US, as we are virtually unable to get natural insulins at all. I guess we just live with the e-coli insulins and then die. I guess we all die - so... we all die sooner or later. Let's all just be careful in all we eat and all that we partake of medicines and pharmacology.

[DeusXM]

Insulin is probably the main culprit behind aging and problems like cancer, ms, diabetes, lupus, etc...·

What? Where on earth did you dream this up from?

Modern insulins are quite impure, you get a lot of unknowns by injecting them, probably a lot of e-coli DNA that may wreak havoc in your body. Natural insulins have a higher degree of purity than modern e-coli bacteria insulins. E-coli bacterias are a common source of diseases and they are what we poop out.

Then you obviously don't understand how insulin is produced, nor what e.coli is. E.coli is naturally present in your body and it generally stays in your body since they actually help your digestion. Secondly, insulin doesn't contain any DNA. It's a protein chain produced by genetically modified e.coli bacteria. The insulin produced by these bacteria is identical to the insulin you would produce yourself. Its action is modified by adding other chemicals to that insulin.

I don't understand why people are so excited about those "fast acting insulins".

Generally it's because they offer your more flexibility. People aren't 'excited' about them anymore either, they've been around for about 20 years.

I really think that if you're able to use natural insulins, then take that option.

Hang on - so you're saying that any insulin produced by genetically modified bacteria, designed to be identical to your own insulin, is bad because it 'might contain e.coli DNA', but it's apparently no problem at all to use insulin derived from an entirely different species with no modification?

I'm not disputing there is a place for animal derived insulins, since some people do very well on them, but to just chuck out the entire concept of human insulin because it involves a bit of advanced science to produce is overkill. The argument 'natural = better' doesn't necessarily hold water because if anything, animal-derived insulins are also 'unnatural'.

I thimk that carbs are not essential and our bodies are not built for the loads of carbs we ingest without heavy exercise.

I don't necessarily dispute this but this isn't the same as saying 'you should never eat carbs', it's just a rational argument to say that you shouldn't stuff yourself with them.

Then there is alloxan, which is produced when you mix chlorine with proteins. White flour in the US and some third world countries is bleached with chlorine, which will produce alloxan. Alloxan is used to make some species type 1 diabetic. 1 study claims that alloxan isn't a problem for humans (wonder who sponsored this study), I don't believe a word, since another study shows that in type 1 diabetic children alloxan levels are extremly high, which is more than logical.

Ok, let's deconstruct this in stages.

Yes, alloxan is used to induce T1 in rodents.

The study you cited involving children merely said that there was 'some correlation between alloxan plasma levels and diabetes Type 1 in children' which is very different from 'extremely high'.

The only source I could find that suggested the bleaching of white flour created alloxan was Mercola, a site with its own agenda. As you said, business, business...

Furthermore, if this really was the case, why on earth is T1 such a minority condition within the US? Very few people actually have T1, but if alloxan is indeed a near-guaranteed way to induce T1, and the majority of people eat 'alloxan-containing' white bread, wouldn't we see far higher rates of alloxan?

And doesn't the flour bleaching take place BEFORE the baking process, which would cause the breakdown of the alloxan long before it could get into someone's body?

To me this whole diabetes business is a travesty, and the saddest thing is that most people suffering it are so depressed that they won't research into it and let the duping going on.

The problem is that people are willing to pick up on anything and run with it. The same people who accuse 'big pharm' or 'big sugar' or 'big MSG' of such massive-scale corporate human sacrifice also seem to be the exact same people who can't quite see that those peddling the 'alternative' (Atkins, Bernstein, Mercola, every other 'mainstream-defying health guru') also seem to be making rather a lot of money too.

The major problem facing people with diabetes is a case of public perception and pharmaceuticals trying to maintain the lucrative US market. Public perception is that insulin injections are a problem so an alternative should be found. Pharmaceuticals know that in a private health care market, treatments are better than cures. What's needed is target research by public and governmentally funded science labs into curative mechanisms - research that is already taking place in Canada and the UK at extremely advanced levels.

[BlueSky]

With regard to "modern insulins" the proof of the pudding is in the eating. Modern fast acting and basal insulins facilitate much better BG control than their predecessors did. And side effects are, if anything, less of an issue.

I am intrigued by the apparent link between lack of c-peptide and diabetic complications. But it seems unlikely that this could outweigh the benefits of better BG control.

[sarahspins]

I am intrigued by the apparent link between lack of c-peptide and diabetic complications. But it seems unlikely that this could outweigh the benefits of better BG control.

I agree.. I think like with the addition of Amylin (otherwise known as Symlin) for some, adding c-peptide back into a treatment plan may prove to be beneficial in addition to maintaining good control... it may even have effects that medical science isn't fully aware of yet.

[NoraWI]

So how do we get C-peptide and other possibly necessary ingredients now missing from insulin put back into it? I have been hitting a brick wall with email and letters directed at pharmaceuticals. The argument seems to be it will increase costs. I pay out of pocket for my insulin and my cost in the U.S. is already almost three times that charged in Canada and elsewhere in the world. How arrogant of the manufacturers to blame COST for keeping these factors out of the life-saving insulin we use!

[conguitos]

What? Where on earth did you dream this up from?

It's not a dream, it's just a chemical reaction. Insulin is one of the molecules that transports glucose into a cell, not all glucose in a cell will be transformed into energy, some will be stored, this is a form of glycation, that is known to accelerate aging.

Then you obviously don't understand how insulin is produced, nor what e.coli is. E.coli is naturally present in your body and it generally stays in your body since they actually help your digestion. Secondly, insulin doesn't contain any DNA. It's a protein chain produced by genetically modified e.coli bacteria. The insulin produced by these bacteria is identical to the insulin you would produce yourself. Its action is modified by adding other chemicals to that insulin.

I wouldn't wnat any e-coli bacteria, its DNA or even fragments of it in my bloodstream. Whith a declared purity of 93% can they guarantee that there's nothing else that insulin in the fluid?

Generally it's because they offer your more flexibility. People aren't 'excited' about them anymore either, they've been around for about 20 years.

More flexibility than what? Fast acting bovine insulin?

Hang on - so you're saying that any insulin produced by genetically modified bacteria, designed to be identical to your own insulin, is bad because it 'might contain e.coli DNA', but it's apparently no problem at all to use insulin derived from an entirely different species with no modification?

The purity degree of bovine, porcine, etc... insulins is higher than the GE insulins. I wonder why, if they're more advanced.

I'm not disputing there is a place for animal derived insulins, since some people do very well on them, but to just chuck out the entire concept of human insulin because it involves a bit of advanced science to produce is overkill. The argument 'natural = better' doesn't necessarily hold water because if anything, animal-derived insulins are also 'unnatural'.

It's about choice, would you buy an expensive product that is inferior than something cheaper? Natural vs. GE are just a description on how the insulin is produced.

I don't necessarily dispute this but this isn't the same as saying 'you should never eat carbs', it's just a rational argument to say that you shouldn't stuff yourself with them.

I'm writing about processed foods, that are loaded with stuff that may be toxic to the human body. And that in their combination may be extremely harmful even in small doses.

Ok, let's deconstruct this in stages.

Yes, alloxan is used to induce T1 in rodents.

The study you cited involving children merely said that there was 'some correlation between alloxan plasma levels and diabetes Type 1 in children' which is very different from 'extremely high'.

The only source I could find that suggested the bleaching of white flour created alloxan was Mercola, a site with its own agenda. As you said, business, business...

How alloxan is produced is well understood and is an easy to comprehend chemical process. Usually it involves chlorides and proteins.

You can make pigs, horses, sheep, dogs diabetic with alloxan, not only rodents.

To me there should be 0 alloxan in the bloodstream, so everything above it, is quite high.

The study that claims that alloxan is no problem for ALL humans, did it on fetal b-cell cultures. On every species, fetal b-cells are way more resistant than b-cells from adults to alloxan.

But even if fetal human b-cells are more resistant to alloxan, that doesn't means that they're immune.

Then it may vary from human to human, it looks like if you have more GABA receptors then you're more sensitive to alloxan.

Furthermore, if this really was the case, why on earth is T1 such a minority condition within the US? Very few people actually have T1, but if alloxan is indeed a near-guaranteed way to induce T1, and the majority of people eat 'alloxan-containing' white bread, wouldn't we see far higher rates of alloxan?

What do we know about the causes of Type II? No one can give you a conclusive answer, just that it has something to do with insulin resistance and with overweight.

And doesn't the flour bleaching take place BEFORE the baking process, which would cause the breakdown of the alloxan long before it could get into someone's body?

I don't think that the baking process will destroy alloxan that is binded to a solid environment completely.

The problem is that people are willing to pick up on anything and run with it. The same people who accuse 'big pharm' or 'big sugar' or 'big MSG' of such massive-scale corporate human sacrifice also seem to be the exact same people who can't quite see that those peddling the 'alternative' (Atkins, Bernstein, Mercola, every other 'mainstream-defying health guru') also seem to be making rather a lot of money too.

Yep, and it's their good right, because the mainstream health gurus have no clue either, regarding chronic diseases, that's why they're chronic. And I will trust more Bernstein who has diabetes himself than to a corporate fanboy. And I'm not suggesting here that you're one.

The major problem facing people with diabetes is a case of public perception and pharmaceuticals trying to maintain the lucrative US market. Public perception is that insulin injections are a problem so an alternative should be found. Pharmaceuticals know that in a private health care market, treatments are better than cures. What's needed is target research by public and governmentally funded science labs into curative mechanisms - research that is already taking place in Canada and the UK at extremely advanced levels.

Here I agree with you.

Look it's about choice and correct information.

If you know that white bread can contain alloxan, which is used to make numerous species diabetic, then avoid it or it it. But then you have that information first, to be able to decide, well the ones that didn't know it, could consider a class action suit. Perhaps so we could get some Billions to invest more in research...

If you know that GE insulins don't contain c-peptides and have a lesser purity than natural insulins, then decide by yourself what you want.

And it goes on...

I hope you'll agree with me, that in the US, there's no choice and people get pushed to a lesser quality, more expensive product. There's simply no CAPITALISM on this one.

And that is not fair.

[fgummett]

Insulin is one of the molecules that transports glucose into a cell, not all glucose in a cell will be transformed into energy, some will be stored, this is a form of glycation, that is known to accelerate aging.I'll agree that higher than normal BG levels can lead to glycation which is related to accelerated cell aging (Advanced glycation end products or AGEs) but why pin this one on insulin? Why stop there? What about the food we ate that provided the glucose in the first place??

I'm also not clear that cells store glucose and I doubt that the storage method would be as harmful as glycation if they did. :confused:

Glycation (sometimes called non-enzymatic glycosylation) is the result of a sugar molecule, such as fructose or glucose, bonding to a protein or lipid molecule without the controlling action of an enzyme. Glycation is a haphazard process that impairs the functioning of biomolecules.

[DanG]

The problem is that people are willing to pick up on anything and run with it. The same people who accuse 'big pharm' or 'big sugar' or 'big MSG' of such massive-scale corporate human sacrifice also seem to be the exact same people who can't quite see that those peddling the 'alternative' (Atkins, Bernstein, Mercola, every other 'mainstream-defying health guru') also seem to be making rather a lot of money too.

Really not too much unlike the CO2 scare and the madness about global warming I suspect. The mere comeback that I can hear echo now quite clearly is - you deny global warming? I might - but that is not the issue. The issue is that we nail on to some trivia and run. CO2 is trivia in the global sense, but we nail an issue someone sez is global warming and put it with CO2 and we have a mass hysteria, a Kyoto protocol, etc.

Same issue is with GE insulin versus natural derived animal insulin with c-peptide. We are the guinea pig either way. For 30 years I used c-peptide laden animal derived insulins and suffered the problems of poorly controlled blood sugar - or at leas that is the mantra I can join Richard in saying. Am I suffering today with GE insulin malfunctions? I cannot know. I cannot prefer to use animal insulin. I seem to have one track treatment just like I had with animal derived insulin. My "Kyoto" protocol is blood sugar management at or about 100. A red herring to some, to others - the sole mantra. Eat the ****** fast food and take my humalog and be happy. So, I'm happy. Really. I can't do anything about it, really. I can't afford a Kyoto protocol means of life, so I violate the Kyoto. Oh, well. Small issues are what makes forums thrive with postings from around the globe. Happy happy, until we grow old and pass. Agewise, I am within a decade of Richard and will persist with the humalog and lantus and complain and complain.

[fgummett]

The same people who accuse 'big pharm' or 'big sugar' or 'big MSG' of such massive-scale corporate human sacrifice also seem to be the exact same people who can't quite see that those peddling the 'alternative' (Atkins, Bernstein, Mercola, every other 'mainstream-defying health guru') also seem to be making rather a lot of money too.The major difference is that big pharma/sugar etc... are in business to make money and answer to their shareholders, whereas Bernstein in particular, went back to school aged 40 to train as a Doctor... was that driven by profit or a desire to help others? It's not a conspiracy, its simply about making money and the more you have -- especially in the USA and UK -- the more impact you can have on government policy; via donations to the all the political parties and by powerful lobbying. I don't see Atkins et all with much sway in that regard... as I recall Atkins was dragged in front of a congressional hearing.

[BlueSky]

I'll agree that higher than normal BG levels can lead to glycation which is related to accelerated cell aging (Advanced glycation end products or AGEs) but why pin this one on insulin? ...
Insulin is apparently a key driver in the aging process and the regulation of lifespan. The centenarian studies show that people who live very long typically have low insulin levels. And laboatory studies show that reducing insulin levels in animals prolongs their lives. Here is a really interesting article on it Insulin, Leptin, Diabetes, and Aging: Not So Strange Bedfellows - Diabetes Health (http://www.diabeteshealth.com/read/2008/01/13/5617/insulin-leptin-diabetes-and-aging-not-so-strange-bedfellows/)

[fgummett]

Insulin is apparently a key driver in the aging process and the regulation of lifespan. The centenarian studies show that people who live very long typically have low insulin levels. And laboatory studies show that reducing insulin levels in animals prolongs their lives. Here is a really interesting article on it Insulin, Leptin, Diabetes, and Aging: Not So Strange Bedfellows - Diabetes Health (http://www.diabeteshealth.com/read/2008/01/13/5617/insulin-leptin-diabetes-and-aging-not-so-strange-bedfellows/)Thanks BlueSky... interesting read. I have no problem associating high levels of insulin with all kinds of ill effects... I was questioning the line of reasoning which blamed insulin for glycation simply because it "transports glucose into a cell".

[davef]

You are an inspiration Richard,

I agree 100%. I'm T2 but I have read and re-read Richard's story as I find it both inspirational and motivating.

Foxl,

Not sure why you would describe type 2 as measly.

I don't envy type 2 diabetics at all.

You have to have stronger will power, especially type 2's who only use oral meds to manage it.
.
.
.

I tip my hat to type 2's who have the discipline to maintain good numbers with only oral meds and exercise.


Thanks for that, it can be hard at times but I also tip my hat to T1's who from this side of the "fence" look like the have the raw deal. Working out Basal rates, bolusing, don't think my feeble mind would be up to it :D

[Richard157]

Thanks David, I'm pleased that my story has given you and others inspiration.

Tomorrow morning I am the guest speaker at a joint meeting of two diabetes support groups in Cortland, NY. This will be my first time doing this. I am used to giving a math lecture to a group of college students but this is different. If I am at a loss for words I might start giving a calculus lecture. :D
My topic will be "Living Long Lives With Diabetes".

[foxl]

I agree 100%. I'm T2 but I have read and re-read Richard's story as I find it both inspirational and motivating.



Thanks for that, it can be hard at times but I also tip my hat to T1's who from this side of the "fence" look like the have the raw deal. Working out Basal rates, bolusing, don't think my feeble mind would be up to it :D

I agree, Davef ... it seems to me there is a tradeoff between having to have dietary "willpower" and using dosing JUDGMENT. Hypos and the avoidance thereof look pretty intimidating from here!

ETA: Richard, break a leg! I could not handle a speaking engagement!

[davef]

Well done Richard, they are very lucky to have you, you'll go down a storm!

[owlyn]

On April 7, 2009, I joined a chat with Gary Scheiner on diabetestalkfest.com. Gary is the author of the book "Think Like A Pancreas" and other wonderful books on diabetes and self management. During that chat I asked Gary if he knew any people who have had diabetes for more than 60 years without any complications. This was a moderated chat and the questions were sent to Gary in the order they were asked. The time was running out and I thought my question would not be answered. Then, Gary went overtime and answered my question just before he signed off. His exact reply was:

"Richard - In fact, I do. A 68-year diabetic woman. Research is showing
that there is a genetic sequence that protects some people against
microvascular and neural complications."

That quote might not mean as much to some of you as it does me. It still gives me chills sometimes when I read it. It meant so much to me! I hope it means a lot to some of YOU readers too. It strengthens my determination to keep up my program of self management and makes me think I can reach the record set by William Rounds. William has been Type 1 for 85 years and is alive and well.

Interesting- a few years ago, my Endo (who is one of the top guys in the U.S.) mentioned that he has found that if you don't get any complications in the first 10-12 years or so, you probably will never get them. He had no reason at the time- it was just a clinical observation.

[keeranx]

I agree with delphinus...it seems insulin does offer greater control over blood sugars..i take fast acting insulin via my pump. I eat what I want and as long as i'm taking my insulin for it properly my blood sugars never seem to spike. Even if I want to have a sugary beverage with my meals my blood sugars stay pretty normal. I usually just pump the insulin 3-4 minutes prior to drinking. I've heard there's an insulin for type 2 diabetics, byetta..maybe this could increase control of blood sugars in type 2s?

[DesertRose]

"Richard - In fact, I do. A 68-year diabetic woman. Research is showing
that there is a genetic sequence that protects some people against
microvascular and neural complications."

That quote might not mean as much to some of you as it does me. It still gives me chills sometimes when I read it. It meant so much to me! I hope it means a lot to some of YOU readers too. It strengthens my determination to keep up my program of self management and makes me think I can reach the record set by William Rounds. William has been Type 1 for 85 years and is alive and well.


It gives me chills but not in a good way. If i go based on that way of thinking I will wind up in a deep depression.

My mother also a type 1 has already gone through kidney failure and had a major stroke.

I try to reason with myself and tell myself that this is because she was diagnosed before todays advanced medicine. Im sure having no idea what her blood sugar really was until the early 1980's ( when they finally got home glucose meters) had a lot to do with the equation.

However I am not ruling out a genetic basis completley. I take darn good care of myself and found myself to be spilling a smallamount of protien in my urine. Its under control now and I am on an ace inhibitor but boy oh boy does that scare the stuffing right out of me - esp when I hear about the whole gentic basis thing.

But anywho all i can do is keep on keepin on and doing my very best to take care of myself. I wish us all the very best!